scholarly journals DNA debate. An online public engagement initiative

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
C Mayeur ◽  
W Van Hoof
Keyword(s):  
Health Care ◽  
Public Awareness ◽  
Public Debate ◽  
General Interest ◽  
Genomic Information ◽  
Radio Stations ◽  
The Public ◽  
Societal Issues ◽  
Societal Norms ◽  
Norms And Values

Abstract Because of personalized medicine and the need for massive data sharing, genomics is becoming everybody's business. There is a need to raise public awareness and to make citizens' voices heard on the ethical, legal, and societal issues (ELSI) in genomics. Therefore, Sciensano - the scientific Institute of Public Health in Belgium - organized an online public debate on the use of genomic information in health care, to produce recommendations based on citizens' values for health policymakers, related experts, and stakeholders. To launch this public debate, Sciensano created an interactive website with a discussion platform. We provided more than 75 high-schools with an educational package to help them organize the debate in classrooms, and organized an essay contest. We developed an online teaser test, based on 15 ethical dilemmas in genomics, and a short information video. The DNA debate was covered by national newspapers, television, and radio stations. In total, 1106 users voiced 1247 opinions on the website. Preliminary results from the qualitative analysis of these contributions show great diversity in societal norms and values surrounding genomics. The general interest for the DNA debate indicates that citizens realize that genomics can have a big impact on the organization of health care and that they are willing to contribute to the discussion about how genomic information should be governed in society. This DNA online debate shows that citizens can make meaningful contributions to a complex field like ELSI in genomics. Continued involvement of the public in the governance of genomic information in society is vital. It ensures that societal norms and values guide the technology and not the other way around. Key messages The online DNA debate raised public awareness and made citizens’ voices heard on the ethical, legal, and societal issues in genomics. Continued involvement of the public in the governance of genomic information in society is vital.

scholarly journals Trends and Patterns in the Public Awareness of Palliative Care, Euthanasia, and End-of-Life Decisions in 3 Central European Countries Using Big Data Analysis From Google: Retrospective Analysis (Preprint)

2021 ◽  
Author(s):  
Matthias Huemer ◽  
Daniela Jahn-Kuch ◽  
Guenter Hofmann ◽  
Elisabeth Andritsch ◽  
Clemens Farkas ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Assisted Suicide ◽  
Public Awareness ◽  
End Of Life Decisions ◽  
The Public ◽  
Care Services ◽  
Life Decisions ◽  
Advance Health Care Directives

BACKGROUND End-of-life decisions, specifically the provision of euthanasia and assisted suicide services, challenge traditional medical and ethical principles. Austria and Germany have decided to liberalize their laws restricting assisted suicide, thus reigniting the debate about a meaningful framework in which the practice should be embedded. Evidence of the relevance of assisted suicide and euthanasia for the general population in Germany and Austria is limited. OBJECTIVE The aim of this study is to examine whether the public awareness documented by search activities in the most frequently used search engine, Google, on the topics of <i>palliative care, euthanasia</i>, and <i>advance health care directives</i> changed with the implementation of palliative care services and new governmental regulations concerning end-of-life decisions. METHODS We searched for policies, laws, and regulations promulgated or amended in Austria, Germany, and Switzerland between 2004 and 2020 and extracted data on the search volume for each search term topic from Google Trends as a surrogate of public awareness and interest. Annual averages were analyzed using the Joinpoint Regression Program. RESULTS Important policy changes yielded significant changes in search trends for the investigated topics. The enactment of laws regulating advance health care directives coincided with a significant drop in the volume of searches for the topic of euthanasia in all 3 countries (Austria: −24.48%, <i>P</i>=.02; Germany: −14.95%, <i>P</i><.001; Switzerland: −11.75%, <i>P</i>=.049). Interest in palliative care increased with the availability of care services and the implementation of laws and policies to promote palliative care (Austria: 22.69%, <i>P</i>=.01; Germany: 14.39, <i>P</i><.001; Switzerland: 17.59%, <i>P</i><.001). The search trends for advance health care directives showed mixed results. While interest remained steady in Austria within the study period, it increased by 3.66% (<i>P</i><.001) in Switzerland and decreased by 2.85% (<i>P</i><.001) in Germany. CONCLUSIONS Our results demonstrate that legal measures securing patients’ autonomy at the end of life may lower the search activities for topics related to euthanasia and assisted suicide. Palliative care may be a meaningful way to raise awareness of the different options for end-of-life care and to guide patients in their decision-making process regarding the same.

scholarly journals TANTANGAN DALAM PENYELENGGARAAN PELAYANAN PUBLIK YANG EFEKTIF PADA PANDEMI COVID 19

2021 ◽  
Vol 7 (2) ◽  
pp. 459-480
Author(s):  
Winsherly Tan
Keyword(s):  
Health Care ◽  
Public Transport ◽  
Public Services ◽  
Good Governance ◽  
Public Awareness ◽  
The Public ◽  
General Obligation ◽  
Government Capacity ◽  
The Government ◽  
The Welfare State

State or government affairs shall be conducted in accordance with the principles of good governance. This is considered a must in normal times and more so when the government have to deal with the COVID-19 pandemic. This general obligation is also in line with the theory proposed by Muchsan about the welfare state and the government’s obligation to provide public services. But reality shows a different picture. The Indonesian government seems to fail in providing good and reliable services in health care, public transport, social assistance, economy, and security.  One solution proposed is to appoint a person in charge of managing public complaints. The expectation is that this will empower the public, raise public awareness and increase government capacity to provide for public services.

scholarly journals Experiences of Social Stigma Among Patients Tested Positive for COVID-19 and Their Family Members: A Qualitative Study

2021 ◽  
Author(s):  
Chii Chii Chew ◽  
Xin Jie Lim ◽  
Chee Tao Chang ◽  
Philip Rajan ◽  
Nordin Nasir ◽  
...  
Keyword(s):  
Health Care ◽  
Qualitative Study ◽  
Social Stigma ◽  
Public Awareness ◽  
Family Members ◽  
Public Understanding ◽  
Religious Leader ◽  
Care Providers ◽  
The Public ◽  
The Government

Abstract Background: Social stigma against persons infected with COVID-19 is not uncommon. This qualitative study aimed to explore the experience of social stigma among COVID-19 positive patients and their family members. This cross-sectional study was conducted between April to June 2020 in Malaysia. Patients recovered from COVID-19 for at least one month and their family members who were tested with negative results, Malaysian and aged 18-65 years old were purposively sampled. Cold call method was employed to recruit patients while their family members were recruited by their recommendations. Telephone interviews were conducted with the participants after obtaining their verbal consent.Results: Three themes emerged from the interviews: (Ι) experience of stigmatization, (ΙΙ) perspective on disease disclosure, and (ΙΙΙ) suggestion of coping and reducing stigma. The participants expressed their experiences of being isolated, labelled, stereotyped and blamed by the people surrounding them including the health care providers, neighbours, and staff at the service counters. Some respondents expressed their willingness to share their experience with others as a mean to stop the chain of virus transmission and while some of them chose to disclose the encountered history for official purpose because of fear and lack of understanding among the public. As suggested by the respondents, the approaches in addressing social stigma required the involvement of the government, the public, health care provider, and religious leader. Conclusion: Individuals recovered from COVID-19 and their families underwent experience of social stigma. Fear and lack of public understanding of the COVID-19 disease were the key factors for non-disclosure. Some expressed their willingness to share the experience and perceived it as method to increase public awareness and thereby reducing stigma. Multifaceted approaches with the involvement of multiple parties including the government, non-governmental organization as well as the general public were recommended as important measures to address the issues of social stigma.

Karaktermord, angreb og selvanklager omkring Knausgårds Min kamp

2021 ◽  
pp. 106-122
Author(s):  
Rikke Andersen Kraglund
Keyword(s):  
Media Coverage ◽  
Ethical Dilemmas ◽  
Public Debate ◽  
Rhetorical Strategies ◽  
The Public ◽  
Norms And Values ◽  
The Family ◽  
Artistic Freedom ◽  
The Media ◽  
The Relationship

This article studies the effects of the ambiguous accusations around Karl Ove Knausgaard’s novel in six parts, My struggle (2009-11). The novel’s portrait of a number of named individuals and family members brought the relationship between artistic freedom and defamation, responsibility, guilt and shame up for discussion, and initiated negotiations of collective norms and values in connection with autobiographical novels. An analysis of the rhetorical strategies behind the family’s accusations at the time of the publication, initially illuminates the ethical dilemmas the family helped to raise in the public debate. Next, the accusations in the novels themselves are studied and the article shows a need to consider how differently the accusations appear in and outside the novels, because the autobiographical novel establishes an ambiguous statement that is not found in the media coverage

scholarly journals Trends and Patterns in the Public Awareness of Palliative Care, Euthanasia, and End-of-Life Decisions in 3 Central European Countries Using Big Data Analysis From Google: Retrospective Analysis

10.2196/28635 ◽  
2021 ◽  
Vol 23 (9) ◽  
pp. e28635
Author(s):  
Matthias Huemer ◽  
Daniela Jahn-Kuch ◽  
Guenter Hofmann ◽  
Elisabeth Andritsch ◽  
Clemens Farkas ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Assisted Suicide ◽  
Public Awareness ◽  
End Of Life Decisions ◽  
The Public ◽  
Care Services ◽  
Life Decisions ◽  
Advance Health Care Directives

Background End-of-life decisions, specifically the provision of euthanasia and assisted suicide services, challenge traditional medical and ethical principles. Austria and Germany have decided to liberalize their laws restricting assisted suicide, thus reigniting the debate about a meaningful framework in which the practice should be embedded. Evidence of the relevance of assisted suicide and euthanasia for the general population in Germany and Austria is limited. Objective The aim of this study is to examine whether the public awareness documented by search activities in the most frequently used search engine, Google, on the topics of palliative care, euthanasia, and advance health care directives changed with the implementation of palliative care services and new governmental regulations concerning end-of-life decisions. Methods We searched for policies, laws, and regulations promulgated or amended in Austria, Germany, and Switzerland between 2004 and 2020 and extracted data on the search volume for each search term topic from Google Trends as a surrogate of public awareness and interest. Annual averages were analyzed using the Joinpoint Regression Program. Results Important policy changes yielded significant changes in search trends for the investigated topics. The enactment of laws regulating advance health care directives coincided with a significant drop in the volume of searches for the topic of euthanasia in all 3 countries (Austria: −24.48%, P=.02; Germany: −14.95%, P<.001; Switzerland: −11.75%, P=.049). Interest in palliative care increased with the availability of care services and the implementation of laws and policies to promote palliative care (Austria: 22.69%, P=.01; Germany: 14.39, P<.001; Switzerland: 17.59%, P<.001). The search trends for advance health care directives showed mixed results. While interest remained steady in Austria within the study period, it increased by 3.66% (P<.001) in Switzerland and decreased by 2.85% (P<.001) in Germany. Conclusions Our results demonstrate that legal measures securing patients’ autonomy at the end of life may lower the search activities for topics related to euthanasia and assisted suicide. Palliative care may be a meaningful way to raise awareness of the different options for end-of-life care and to guide patients in their decision-making process regarding the same.

THE PEDIATRICIAN AND THE SPECIES: SOME IMPLICATIONS OF OUR ACHIEVEMENTS

PEDIATRICS ◽  
1971 ◽  
Vol 47 (2) ◽  
pp. 339-351
Author(s):  
Wolf W. Zuelzer
Keyword(s):  
Child Health ◽  
Public Debate ◽  
The Other ◽  
General Interest ◽  
Open Spaces ◽  
Life And Death ◽  
The Public ◽  
Social Prestige ◽  
Shop Talk ◽  
The Voice

I am deeply grateful to Dean Smart, Professor Court, Dr. Walker, and the other members of the Department of Child Health for the honor of this invitation,* but I cannot help wondering whether I would have had the courage to accept it if I had known beforehand what the Jacobson Lecture entails. It is one thing to address a gathering of professional colleagues on some innocuous subject of a strictly technical nature, but an altogether different thing to face members of every faculty of this University with a talk supposed to be of general interest. The physician is rarely called upon to leave the comfortable regions of shop talk for the wide open spaces of public debate, nor, broadly speaking, is he eager to venture into such dangerous territory where he might be blown about by the winds of controversy. PROFESSIONAL INSULARITY The reasons for this reticence are not hard to find. For one thing, we don't like being contradicted, least of all by laymen. Regrettably, the aura of mystery which from time immemorial has served us as a protective cloak has been dispelled by an enlightened public, and our social prestige has suffered somewhat from the levelling forces of the democratic age. Still, the doctor remains the arbiter of life and death and as such speaks with the voice of authority. His experience at the bedside and in his office conditions him to expect acquiescence, and he is prone to transfer this expectation from his patients to the public at large and to be surprised and hurt when it is disappointed.

scholarly journals EcoDragons: A Game for Environmental Education and Public Outreach

Insects ◽  
2021 ◽  
Vol 12 (9) ◽  
pp. 776
Author(s):  
Rassim Khelifa ◽  
Hayat Mahdjoub
Keyword(s):  
Life History ◽  
Environmental Education ◽  
Public Awareness ◽  
Scientific Information ◽  
Ecological Processes ◽  
Environmental Advocacy ◽  
The Public ◽  
Societal Issues ◽  
Universal Language ◽  
The One

Environmental education is crucial to tackling the pressing ecological and societal issues on our planet. Although there are various ways to approach environmental education and raise public awareness, games are potentially an effective vehicle of knowledge and engagement because they vulgarize the scientific information in a universal ‘language’ and bring people together. Here, we designed a game, EcoDragons, that integrates principles of ecology, biological conservation, life history, and taxonomy. The protagonists of the game are dragonflies and damselflies. The aim of the game is to colonize habitats with different species and use ecological processes (e.g., predation, competition, and mutualism) and conservation measures (e.g., restoration and reintroduction) to face random environmental disturbances (e.g., climate warming, drought, pollution, and biological invasion). The version of the game presented in this paper was based on European species. The game includes 50 species (25 dragonflies and 25 damselflies). The winner of the game is the one who occupies more habitats, establishes and maintains the largest number of species, and solves more anthropogenic disturbances. EcoDragons has a global outreach potential to educate the public about ecology, conservation, and organismic life history, and will probably engage people in environmental advocacy.

scholarly journals Experiences of social stigma among patients tested positive for COVID-19 and their family members: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Chii-Chii Chew ◽  
Xin-Jie Lim ◽  
Chee-Tao Chang ◽  
Philip Rajan ◽  
Nordin Nasir ◽  
...  
Keyword(s):  
Health Care ◽  
Qualitative Study ◽  
Social Stigma ◽  
Public Awareness ◽  
Family Members ◽  
Public Understanding ◽  
Religious Leader ◽  
Care Providers ◽  
The Public ◽  
The Government

Abstract Background Social stigma against persons infected with COVID-19 is not uncommon. This qualitative study aimed to explore the experience of social stigma among COVID-19 positive patients and their family members. Method This cross-sectional study was conducted between April to June 2020 in Malaysia. Patients who have recovered from COVID-19 for at least 1 month and their family members who were tested with negative results, Malaysian and aged 18–65 years old were purposively sampled. Cold call method was employed to recruit patients while their family members were recruited by their recommendations. Telephone interviews were conducted with the participants after obtaining their verbal consent. Results A total of 18 participants took part in this study. Three themes emerged from the interviews: (Ι) experience of stigmatization, (ΙΙ) perspective on disease disclosure, and (ΙΙΙ) suggestion on coping and reducing stigma. The participants expressed their experiences of being isolated, labelled, and blamed by the people surrounding them including the health care providers, neighbours, and staff at the service counters. Some respondents expressed their willingness to share their experience with others by emphasizing the importance of taking preventive measure in order to stop the chain of virus transmission and some of them chose to disclose this medical history for official purpose because of fear and lack of understanding among the public. As suggested by the respondents, the approaches in addressing social stigma require the involvement of the government, the public, health care provider, and religious leader. Conclusion Individuals recovered from COVID-19 and their families experienced social stigma. Fear and lack of public understanding of the COVID-19 disease were the key factors for non-disclosure. Some expressed their willingness to share their experience as they perceived it as method to increase public awareness and thereby reducing social stigma. Multifaceted approaches with the involvement of multiple parties including the government, non-governmental organization as well as the general public were recommended as important measures to address the issues of social stigma.

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